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III. How do we document CFS?

What type and form of medical documentation is required by Social Security in the new Ruling?

The Ruling states:
“In cases in which CFS is alleged, we generally need longitudinal evidence because medical signs, symptoms, and laboratory findings of CFS fluctuate in frequency and severity and often continue over a period of many months or years. [“Longitudinal evidence” means that which is collected and documented over multiple office visits over a reasonably substantial period of time.]

Longitudinal clinical records reflecting ongoing medical evaluation and treatment from the person's medical sources, especially treating sources, are extremely helpful in documenting the presence of any medical signs or laboratory findings, as well as the person's functional status over time. The longitudinal record should contain detailed medical observations, information about treatment, the person's response to treatment, and a detailed description of how the impairment limits the person's ability to function.” (Emphasis added.)

If the person has been ill for more than 12 months prior to application, the Ruling states:
“…Generally we will request evidence from your medical sources for the 12 month period preceding the month of application unless there is reason to believe that development of an earlier period is necessary…”

Also: “When the alleged onset of disability secondary to CFS occurred less than 12 months before adjudication, we must evaluate the medical evidence and project the degree of impairment severity that is likely to exist at the end of 12 months. Information about the person's treatment and response to treatment, as well as any medical source opinions about the person's prognosis at the end of 12 months, helps us decide whether to expect the MDI to be of disabling severity for at least 12 consecutive months.”

Building the medical record over time

Comments: It is the patient's responsibility to work with his/her physician(s) to develop and maintain a detailed and complete record in which entries are made at sufficiently frequent periodic intervals.

The Ruling requires documentation of medical signs, symptoms, laboratory findings and observations as to how the patient's illness over time has limited and will limit his/her ability to function over time. The Ruling is clear that the doctors’ office notes, record, and charts are primary evidence.

Most of us when we first become ill never imagine that at some point we may need to apply for disability, whether it be Social Security or through our employer.

Nevertheless many ME/CFS patients, at some point, find that they must seek disability benefits. Therefore, especially if a patient is considering applying, and also if a patient is already receiving benefits (anticipating a review), he or she must alert and actively work with his/her physicians to build a comprehensive clinical record that records each and every medical sign, symptom and laboratory result during or following each office visit.

The Ruling makes clear that prior to or during an application or review period, a 12 month consecutive clinical record is needed. Therefore, anticipating or during such periods, patients must make efforts to visit their doctors frequently (6-8 weeks) in order to build the necessary record and be in the best position to document their illness. During this period, patients should discuss with their physicians which lab tests would be appropriate for the documentation of their CFS.

After a successful application or review, patients should maintain ongoing examinations/follow-up with their physicians (every 4-6 months) in order to maintain a current and ongoing record in anticipation of reviews. Too many CFS patients receiving disability do not see their physicians for long periods of time, often because no new or specific treatments are offered. Then when a review occurs there is no current medical documentation.

Also, very important: While the Ruling emphasizes the 12-month period prior to application or review, the illness in many CFS patients has lasted at least several years prior to application, if not longer. In these cases, it is crucial to provide as a full medical record as possible to Social Security including: the nature of onset, the development and progression of the illness and its symptoms (which may change over time), including their severity. Also, there should be documentation of various treatments and treatment outcomes. The full picture of an illness like CFS can best be documented over its full course. Such documentation adds weight and authenticity to the disability application.

Evidence from medical sources other than physicians, and from non-medical sources

“In addition to obtaining evidence from a physician, we may request evidence from other acceptable medical sources, such as psychologists, both to determine whether the person has another MDI(s) and to evaluate the severity and functional effects of CFS or any of the person's other impairments. Also, “Under our regulations…we may also consider evidence from medical sources we do not consider ‘acceptable medical sources’ to help evaluate the severity and functional effects of the impairment.” This might include an ongoing relationship with a chiropractor, naturopath, etc.

We may also consider information from non-medical sources. This information may also help us assess the person's ability to function day-to-day and over time. It may also assist us in assessing the person's allegations about symptoms and their effects (see section IV below). Examples of non-medical sources include:

  • Spouses, parents, siblings, other relatives, neighbors, friends, and clergy;
  • Past employers, rehabilitation counselors, and teachers; and
  • Statements from SSA personnel who interviewed the person."